Friday, January 25, 2013

Low ANC and no school

Today we were supposed to go to Salt Lake to start the 2nd part of Delayed Intensification.  Austin's ANC has to be at least 750 and platelets 75,000 to start the next phase.  Austin's blood work hasn't been low since he was diagnosed back in August.  So we were surprised when his ANC today was 400.  Now we get a week off from chemo and Austin has to stay home from school so he doesn't get sick.  We weren't very sad about not traveling because the weather in Salt Lake has been nasty, but it still means being delayed a week and extending all this nonsense another week. Oh well.  We will enjoy the week off.  Austin is feeling good right now so we will enjoy that while it lasts.
Doing homework and having his temperature checked
 for the thousandth time.  Austin says I worry too much.

getting blood drawn

No school means hanging out with the 2 year old

Watching TV with Jaxon

Sunday, January 20, 2013

On the Roller coaster

 This life is a roller coaster of ups and downs, good and bad, ecstasy and heart ache.  The world of cancer throws a whole different spin on what you thought your life would be.  As a parent watching your child fight cancer, the ups and downs are sometimes so severe that it's hard to catch your breath.  It's so hard to describe unless you experience it for yourself, something I wouldn't wish on my worst enemy.  While most of my energy is focused on Austin, just being in this world of cancer means that every other child's battle is personal.  It's a very special, exclusive club that we belong to.  I cry (and cry and cry...) when another child relapses, when a new diagnosis is made, and especially when one of these precious babies finally exhausts the fight and earns their angel wings.  My heart breaks for those parents.  I can't even watch a commercial on tv about childhood cancer without bawling like a baby.  This week was difficult in that I am struggling with Austin's roller coaster but also that of so many other children.  This week I learned of a sweet boy that has relapsed and has gone home to enjoy the time he has left with his family, a new diagnosis of ALL with a 2 year old, and finally the great news that a little girl has continued to be cancer free.  See what I mean by roller coaster?  I don't think my heart can take much more.  Austin is struggling with the side effects of steroids.  He has had a lot of pain.  It's so hard to watch and be unable to fix it or take it away.  I feel so helpless.

We have had so many wonderful friends and family that lift us up and help us feel loved.  I thank all of you from the bottom of my heart.  We couldn't make it without you.  Thank you for supporting us during this roller coaster.  Some day it will slow down and we will be able to get off.  Until then, we thank you for riding along with us.

Friday, January 11, 2013

A Little Hypnosis

After last weeks anxiety and nausea, I decided to talk to Michael, Dixie's Child Life Specialist.  I wondered if he had any non-medicinal ways to prevent or help the miserable side effects of Chemo, and especially the anxiety associated with it.  He mentioned a few things to try.  He suggested peppermint oil but given Austin's big aversion to all things mint, I shot that down pretty fast.  Next he suggested breaking the mental cycle that causes the anxiety.  He said to mix up our routine such as change the route that we drive to the hospital or stop for a drink on the way, anything to break up the string of thoughts that lead to the anxiety.  So today we went to see Dr. Walker and get Austin ok'd for Chemo.  His ANC was 800 today, way down from last weeks 5700.  His Hematocrit was still good at 38. We will have to be extra diligent this week to keep Austin away from germs that can make him sick.  We expected the ANC to go down, but it was shocking to see how much it can drop in a week.
Waiting for the Doctor

Getting checked out by Dr. Walker

On the way to the Peds floor we stopped and got Austin a milkshake to take with him.  If nothing else, eating the ice cream would distract him from being so worried.
Iceburg milkshake Yum!

Here we go

Getting his port accessed
So Austin got comfy with his ice cream and Jason prepared his supplies to access Austin's port.  Michael showed up at just the right time to distract Austin from the pain with jokes and laughs.   Just one poke later and we were in business.

Listening to Michael
 The next thing that Michael wanted to try was hypnosis.  Now, my only experience with hypnosis is  cheesy hypnotists on cruise ships so I didn't know what to expect.  Michael had Austin tell him what color to him represented nausea (he said red) and what color represented peace and happiness (he said green).  Michael had Austin get comfortable and close his eyes and then think and visualize the red coming out of him and the green going in.  He had Austin slow his breathing down and concentrate on feeling at peace and free from pain and nausea.


Michael, Child Life Specialist
I have no idea whether Austin really was hypnotized (at one point I thought he fell asleep), but I really don't care.  What mattered to me was that Austin was comfortable, he wasn't worried or anxious, and he was able to get through the treatment without any nausea.  Plus, Michael told him to use these techniques at home on himself to help him feel better when he feels sick.  I am so grateful to Michael for taking the time and caring about Austin enough to really make him feel at ease.  I know it's "just" his job, but he has no idea how much Austin loves to see him and how much he helps Austin feel better.  

Saturday, January 5, 2013

Steroids and more Chemo...yuck

 We had a rough week.  After 2 rounds of Chemo in Salt Lake, we headed back home.  Austin is taking steroids this week and they make him feel miserable and make him very grumpy.  He only had a day or so of feeling ok before having to go back for more chemo.  Thankfully, we can stay in St George for the next two rounds.  We saw Dr Walker, got the Ok to go and headed to the Peds floor for chemo.  Austin did well getting his port accessed and got the Vincristine and more of the dreaded "Red Devil", Doxorubicin.  Austin started feeling nauseous before the infusion was complete.  Part of what Austin is battling now is called "anticipatory nausea".  He begins to get nauseas simply by thinking about getting chemo and dreading getting sick afterwards.  Dr. Walker recommended trying some Ativan before starting chemo this time to see if it would help.  I'm not sure the Ativan helped much since Austin still felt sick.  Austin's counts are awesome this week.  His ANC is 5700, the highest it's been since diagnosis.  This isn't really a surprise because the steroids can cause the counts to go up.  We expect they will start going down in the next few weeks.  
Getting checked out by Dr Walker

Waiting to get Chemo

Getting his port accessed, laughing with Nurse Jason


Getting Doxorubicin or "The Red Devil".
Austin's red cheeks are caused by the steroids he is taking.

Finishing Chemo, feeling yucky

Trying not to throw up--this sucks!

Going home--thanks for the puppy and the soft blanket!